This is a reprint of a post I wrote for Nursing Clio in September 2012. It is the second of a three-part series on genetics and genetic counseling.
Welcome to the second in a series of posts discussing genetics, prenatal testing, and genetic counseling. In this post we’ll be thinking about blame and birth atypicality.
Earlier this month the New York Times and other news media reported on the findings of a recent study published in the journal Nature. In some cases, the study suggested, the increased genetic mutations found in older men’s sperm could make it more likely their offspring might develop autism or schizophrenia. (Note the liberal use of hedging words – some, could, might, etc. – these conditions are still not well understood, nor are their causes.). “Let the baton of blame pass to the next runner,” KJ Dell’Antonia’s NYT article opened, hopefully tongue-in-cheek. Other headlines have been similar: “Study Links Autism Risk to Father’s Age”, “Hooray for the Male Biological Clock!”, and Are Older Fathers Causing Autism In Their Kids?.
I agree with the general idea of these and other stories that call for men to share in thinking about fertility issues. It’s understandable for people like Ann Friedman, writing for the NY magazine, to “resent being asked by older relatives and well-meaning co-workers if we’re planning for kids yet, while our brothers and uncles and boyfriends are blissfully unquestioned.” Women have, for easily the past century and more, bore the brunt of the guilt whenever something unexpected happened in a pregnancy (including, as these articles discuss, the birth of a child with a condition like autism).
In 1924, for example, Mrs. W.M. wrote an anxious letter to the United States Children’s Bureau. “I have been told how easy you can mark a baby,” she explained. “It has really made me ill at times, & awfully nervous; even at a movie if an actor should put his hand on his face,” she continued, “I get a scared & sinking feeling around my heart. I worry & think, I only hope that wont or didnt [sic] mark the baby.”
These were common beliefs not only in the 1920s (when organizations like the US Children’s Bureau were trying to replace them with medical advice) but for many decades before, and some after. The Children’s Bureau staff responded that stories about “marking” babies – a belief that a sudden fright or staring too long at something could have a physical influence on the developing fetus – were based on ignorance and superstition. The best way to guarantee a healthy baby, they told W.M., was to follow the Bureau’s rules of hygiene, which included good diet, rest, relaxation, and moderate recreation.
This was certainly sound advice. It encouraged women to depend on doctors and medicine rather than worry about traditional beliefs, but it didn’t change the implication that there was still something to worry about. Someone still might be blamed: no longer for looking too long at a startling image, but for eating the wrong things or, today, for having “deleterious” DNA.
Spreading the blame around is not the answer.
The NYT article closed with the apparent prediction that men are unlikely to worry about findings like these, implicitly because men don’t worry. Culturally speaking, worrying about things like pregnancy (and health) is “womanly.” And, as W.M.’s story suggests, this assumption grows out of a long history in which women were often specifically blamed for anything unexpected in a pregnancy.
Not feeling guilty is a luxury many women, who grew up in a culture with a history of blame, don’t have. Instead, women more often feel they have to keep their feelings of guilt secret because, as the NYT article quotes one father, “feeling guilty is ridiculous.” He’s probably right, in that feelings of guilt and blame don’t help anybody, and can be quite damaging. But how do we go about addressing it without making people feel “ridiculous” for feeling guilty? Moreover, I worry we’re just skimming the surface of a deeper problem.
Spreading the blame around is not the answer. We really need to be asking ourselves, what is the blame for? What is the anxiety about? Where does the guilt come from? And what do these feelings suggest about how we view difference and disability?
In most cases the anxiety, guilt, and blame stems from the birth of a child with some degree of difference and is rooted in the history I touched on with W.M.’s story. In these articles the difference is autism, but it could just as easily be Down syndrome or blindness. While people debate the causes of these conditions – environment, genes from the mother, genes from the father – very rarely do they consider what the debate says about the people with these conditions. What does it mean that their birth triggers blame and a search for “what went wrong.”
This is, admittedly, very tricky territory. There are many conditions that result in severe pain and early death. A search for causes that might treat or prevent these conditions is a decidedly worthy endeavor. But where do we draw the line? As I discussed in my previous post, it’s extremely difficult to define the point where disease ends and difference begins. What about blindness? Many people would probably view it as a disability, but not everybody does – there is nothing “natural” or obvious about seeing blindness as a negative trait (see Deborah Kent’s “Somewhere a Mockingbird,” for example). I’d imaging you’ll find similar perspectives at the annual Paralympic Games that started in London today.
Also consider the fact that as recently as the 1930s things like albinism, below-average intelligence, and such vaguely defined conditions as “feeble-mindedness” would have also made the list of “deleterious” traits. It’s even more difficult to separate difference from disease when one notices how definitions of acceptable difference change drastically over less than one lifetime.
These issues are important not only to the question of blame or guilt following childbirth, but also to prenatal testing and the decision to have a child in the first place.
One of the many problems with blame is that it interferes with parents’ decisions. Take prenatal testing as an example. If a test exists for a condition like Down syndrome, then what does it suggest about the woman or couple who chooses not to have the test? Does it reflect on them as prospective parents? Or it is just a decision? When we think in terms of blame, people are generally less free to make their own decisions unimpeded by how they might be judged – see Ashley Baggett’s recent post on “Mom Shaming” as an example of this tendency.
So how do we respond to this? As you might have guessed, particularly if you read the first post in this series, genetic counseling has the potential to at least ease the blame and help parents really understand what disability and difference really mean. What will life actually be like for them and their children? What do the tests say, and what don’t they say? What are the options after having the test? Sensitive genetic counseling may not be able to completely eliminate blame and guilt, but it can at least teach coping strategies and bring it out into the open where it can be dealt with.
1. I will continue using the word “atypical” rather than “defect” or some variant of that because I dislike the way these words connote value. A “defect” in English is not intended as something good, or even neutral, and I would prefer to find a word that skews more towards neutrality.
2. In fact, Nature’s own report on the study specifically said: “The study does not prove that older fathers are more likely than younger ones to pass on disease-associated or other deleterious genes”; only that it is a “strong implication.” The subject of risk factors – what they mean and how they’re communicated – is a topic for another post, but it’s important to bear in mind that studies such as this only hint at part of a much larger story.
3. Mrs. W.M. to the United States Children’s Bureau, November 28, 1924, quoted in Molly Ladd-Taylor, Raising a Baby the Government Way: Mothers’ Letters to the Children’s Bureau, 1915-1932 (New Brunswick, NJ: Rutgers University Press, 1986), 56.
Creative Commons-licensed flickr photo by Kyle May.